By John Jalsevac

  OTTAWA, March 3, 2008 ( – Yesterday’s Ottawa Citizen featured a two page spread detailing the moving experiences of three separate families with Down Syndrome children.

  In the articles three sets of parents candidly speak of their struggles to care for children with special needs, their deep appreciation for the beauty and the enrichment that their children have brought to their lives, and of Canada’s pervasive anti-disability mindset and the pressure to abort those with disabilities.

  One father, Michael Shaw, told the Citizen that it is thanks only to the negligence of a doctor – who did not communicate to Shaw and his wife the results of a neonatal test that came back positive for Down Syndrome – that his daughter Sydney was born. “I know there would be no Sydney, and that tears me apart now,” says Shaw. “She’s a wonderful, joyous child.”

  Shaw and his wife Leslie say that they had both desired the perfect child – healthy, intelligent, talented. “We got Sydney,” relates Shaw, continuing, “She has enriched my life to a degree I didn’t think was possible. She changed my whole focus on life, on what has value and what doesn’t have value, and what we consider valuable. We don’t all get to be Wayne Gretzky, and there’s nothing wrong with that.”

  Shaw told the Citizen that he is worried that society is “airbrushing” away true diversity, by choosing to kill those who are deemed not worthy of life.

“We often talk about embracing diversity in Canada, but we mean cultural diversity,” says Shaw. “People of different abilities should be part of the Canadian fabric. True diversity in the broadest sense, that’s missing.”

  Shaw points out that the only thing that separates his daughter from other children is a single chromosome, which is the same difference between a male and a female. “But we don’t tell parents, ‘Oh, we’ve identified your fetus as a female. She’s more likely to be predisposed to breast cancer, she’s more likely to be sexually assaulted and she’s more likely to have a lower paying job.”

“Yet, when the single chromosome is for Down Syndrome the medical profession chooses to give a litany of what can go wrong when there’s so much that can go right.”

  Dr. Lise Poirier-Groulx, the subject of another of the three articles, is a medical doctor and a mother of a Down Syndrome child. She relates how when it was discovered that she was pregnant with a Down child, the doctors with whom she dealt strongly pressured her to abort the child. “It was assumed that you were going to terminate,” recounts Poirier-Groulx. “Everywhere I went it was assumed.”

“I got mostly cold stares and silences – Is this doctor for real? What is she doing? – that kind of attitude. We had to constantly state it: No, we don’t want to terminate. There was none of this talk – the pros and cons, positives and negatives of having a handicapped child. We never got that. It was just negative, when do you want to do it (the termination) type of thing.”

  According to the Citizen, some 80-90% of mothers who are found to be pregnant with Down Syndrome children in Canada ultimately decide to abort, the result being that in the past number of decades thousands of children have been “screened” out of existence for the sole reason that they have not been genetically ideal. The means of screening out “undesirable” children is neonatal genetic testing, which is being increasingly pushed by the obstetrical and gynecological community in Canada.

  Krista Flint, the executive director of the Canada Down Syndrome Society (CDSS) says that there is a strong eugenic mindset in Canada. “There’s certainly a social construct around the existence of disability that says people with disabilities are less valuable than those without disabilities,” says Flint, pointing out that, in her experience, most parents who find out they are pregnant with a child with a disability are only given one side of the story. “The central message they receive is ‘Don’t have this baby, it could ruin your life.”

  Nevertheless, despite the horror stories given by the medical community, each of the three families insists – without sugar-coating their experiences – that the positives have far outweighed the negatives.

“It quite an adventure to live with him,” recounts Poriier-Groulx, about her son Christian. 

“I don’t want to butter it up like this is a fairy tale because it isn’t,” she points out. “We still have a lot of medical issues…It’s a lot more work than a regular child, with his physiotherapy, speech therapy and occupational therapy.”

  Nevertheless, she says, “He has changed my whole perspective. When I looked at people who lived with a handicap, I would think poor them, like they were an object of pity. But now, because I live with my son, I see them as a little bit like prophets because they have such a strong message to bring about humanity, about the strength of the human spirit.”

  Each of the families tells of how much those who meet their children enjoy having them around. Elaine Willcock, another of the parents, told the Citizen that she frequently brings her daughter Jamie into work. “Jamie has her job, she sharpens all the pencils and everybody loves her. What kind of world would we live in if we didn’t have people with special needs? It becomes a world where the bar is constantly rising, and it gets kind of like Nineteen Eighty-Four.”

  Read these powerful stories in the Ottawa Citizen:

  Airbrushing away diversity

  ‘He’s brought so much’